Join our campaign to have ribociclib and palbociclib subsidised in Australia

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  • jennyss
    jennyss Member Posts: 2,083 ✭
    Dear @wendy55 , Hope your scananxiety is relieved tomorrow. I have to follow up my letter (sent by email) as I have had no reply either - I'll ring Mark Coulton's office now.
  • iserbrown
    iserbrown Member Posts: 5,766 ✭
    @Tracey_B

    Good work!  I do hope you at travelling okay!  Wishing you the best with your ongoing treatment and wellness.  Are you still painting?

    Take care, sending you a virtual hug xx
  • Sister
    Sister Member Posts: 4,961 ✭
    Haven't heard a sausage from mine!  State elections must be taking up too much time.

  • Sister
    Sister Member Posts: 4,961 ✭
    Rebekkah Sharkie has referred it to Greg Hunt!
  • jennyss
    jennyss Member Posts: 2,083 ✭
    My MP Mark Coulton has done the same thing. 
  • wendy55
    wendy55 Member Posts: 774 ✭
    Hi all, received a letter from my Federal Mp Rowan Ramsey in the seat of grey here in sa I am going to forward a copy to bcna to be put up for everyone to read, makes for light entertainment!

    wendy55
  • Rosie_BCNA
    Rosie_BCNA Member Posts: 217 ✭
    Please find attached the response @wendy55 got back from her MP. She asked for my technical assistance (!!) to upload it. The letter has been cropped to remove identifying details. 
  • Rosie_BCNA
    Rosie_BCNA Member Posts: 217 ✭
    I love your artwork @Tracey_B Thanks for sharing :)
    Rosie 
  • [Deleted User]
    [Deleted User] Orbost, VictoriaPosts: 0
    Glad that you like it Rosie
    Cuddles, Trace
  • iserbrown
    iserbrown Member Posts: 5,766 ✭
    Ran into my local Federal MP just now, Rob Mitchell Member for McEwen - had a photo together and a long discussion about the advocating and the long process of getting drugs onto the PBS.  His office has written to Greg Hunt on my behalf and he'll let me know 

    Here's hoping!!
  • jadziatoo
    jadziatoo Member Posts: 38 ✭
    Got a response from my local Federal Member, Milton Dick, the Federal Member for Oxley. He said that he will raise the issue with the Health Minister at the earliest opportunity.
  • Marianne_BCNA
    Marianne_BCNA Member Posts: 245 ✭
    Hi all,
    Thought you might be interested in this great article regarding the fight to have Palbociclib listed on the PBS. Hopefully this will lead to more publicity!
  • sunandsaltwater
    sunandsaltwater Member Posts: 18 ✭
    edited March 2018
    I've had a successful 23 months on palbociclib so far, and have been very very lucky with it.
    I was on Channel 9 news a year ago and yesterday, I saw BCNA's Facebook post showing Lisa Laird on Channel 7 news in Cairns - well done, BCNA and Lisa Laird! Hope you have more success this round than we did last year!
    I'd like to get in touch with Lisa to compare notes if she is willing. Lisa could you contact me if you're reading this, or BCNA, could you please facilitate this?
    Anyway, my local member is Malcolm Turnbull, and his computer has acknowledged receipt of this letter I sent yesterday:

    Subject: Urgent request, for PBAC meeting in March

    Dear Malcolm Turnbull
    I am a resident of Bondi Beach in your electorate
    I am writing to ask your support to have two important new breast cancer drugs subsidised by the Australian Government. I myself have metastatic breast cancer and have enjoyed 2 years of good quality of life SO FAR by accessing palbociclib.
    Before palbociclib was made available in Australia in July last year, I spent personally approx. $120,000 to obtain it from overseas. (It cost almost $10,000 per month)
    I was one of the few lucky ones who could afford it, having access to my superannuation.
    At last, it is available in Australia. However most women cannot afford to try it, as it costs almost $5000 per month within Australia.
    Ribociclib (Kisqali®) and palbociclib (Ibrance®) belong to a new class of drugs called CDK inhibitors. They are used to treat people living with a particular type of metastatic (advanced) breast cancer, and have been shown in clinical trials to extend the length of time before the cancer spreads by up to 26 months. 
    They are taken as tablets and do not cause common cancer treatment side effects such as hair loss and nausea, so people using them have a good quality of life.

    Currently these drugs are subsidised in many other countries, including the USA, the UK, Germany, Spain, Sweden, Israel, Lebanon, the Gulf states and Argentina, however they are not yet available through Australia’s Pharmaceutical Benefits Scheme (PBS). The cost to purchase them is around $5,000 per month.
    The Pharmaceutical Benefits Advisory Committee (PBAC) is considering both of these drugs at its March 2018 meeting. If they receive a positive recommendation from the PBAC, they will require approval from the Federal Cabinet before they can be added to the PBS.

    As my local Member of Parliament, I ask you to raise this issue with the Health Minister, the Hon. Greg Hunt, and your colleagues in the Federal Parliament to ensure these drugs are listed as quickly as possible. 
    Australia is lagging behind and Australian women and men who could benefit from this important new treatment are missing out.

    Should you require any further information about the CDK inhibitors, please contact Kathy Wells, General Manager Policy, at Breast Cancer Network Australia – kwells@bcna.org.au or 03 9805 2562
    With thanks

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